Moderate to severe crohns? What does this mean?

[Amberaut]

I was diagnosed in 07 with Crohns colitis. I has ulcers through out my large intestines. I had been sick for a year before I went to the doctor for it. They put me steroids, Asacol, entocort, and remicade. Only the steroids helped. I worked in a factory, and over 100 times a night I would have to hunch over to work. This movement made my stomach cramp something awful. When I told them nurse and Doc, they said, "we don't like to say any certain movement makes it worse". Then after being on remicade for 6 months with no relief they still wouldn't take me off it. Eventually I quit my job and started an office job. It was easier to manage there. So I didn't go back to the doctor. That was 6 years ago.
So for 6 years I have been trying to manage it on my own. Stupid I know. But I think for a long time I was ok. But I ended up being used to being in pain all the time, eating a strict diet, and running to the bathroom. I couldn't afford to go to the doctor. I know have better insurance thank God.
Anyway, almost 2 weeks ago I had a really bad flare. Called the next morning and they got me in the following afternoon. The I went I felt better. I tried to explain everything, but it was a rushed visit. They put me on Asacol and an anti-spams med, and philips colon health. I ended up calling back a week later because I had gotten worse. If I ate anything I would hurt for hours afterward and be in the bathroom every 15 minutes. They scheduled a colonoscopy for the following Monday.
But I just got worse. This past Thursday my heart started racing, head hurting, couldn't think, and my legs hurt and felt wobbly. They add me to yesterday's schedule.
I was still out when the doc talked to my sister. He said I have moderate to severe Crohns and that he felt I was too young for surgery. I'm 31 btw. Now I am on the highest dosage of steroids I have ever been on, 60. And he said he will be starting me on Humira. I have the pics from the procedure. There is a large black area in my colon. Along with sores and ulcers. I am getting worried.
I had thought I was doing good until just this year. I could have went sooner, but I had gotten used to pain and thought it would get better. It always had.
I guess I am looking for some answers since I don't yet when I will here from doc again. They took biopsys. but I can't remembe how many.
Anyway, if anyone has any helpful info, I could really use it. I am trying not to show concern for my husbands sake. But I am little freaked out here.
Oh and sorry if this post looks funny or some of the words don't fit. I am posting from my phone and it does weird stuff on this site.

 

[Jennifer]

Moderate to severe meaning its very active and needs aggressive treatment.

Too young for surgery? Odd. I was 17 when I had my resection. Guess it depends on the type of surgery yet I still hate it when doctors tell me I'm too young to have something, screw the age, fix the problem! That black area doesn't sound good. Biopsies can take a while to come back (a few days to weeks even). They check for other health problems including cancer.

The amount of steroids (Prednisone I'm assuming?) depends on your size. I was a teenager and weighed around 110-115lbs, female, 5'4" and was given about 100mg of Prednisone before my resection was decided (I was also on Entocort, Asacol and 6MP). If it is Prednisone, 60mg doesn't sound very aggressive for your situation but the doctor may up the dose in time.

You said you have good insurance now? Find another GI and get a second opinion because that first one should have scheduled a colonoscopy the first time you met them. After 6 years of no treatment and having a flare that entire time and not wanting to take a look inside to see what's actually going on? That's a HUGE no no when I'm looking for a good doctor. I'd take those results to another GI asap.

I've never taken Humira so I can only hope it helps while you look for another doctor (along with the steroids). If you have anymore specific questions feel free to ask.

 

[Amberaut]

My GI doc had said that he wanted to get me into remission or at least better before he did a colonoscopy. Reason being that he doesn't like to cause unnesscary pain. He had me down to have one in 3 months, hope the first set of meds would help me out.
My sis thinks the too young comment is less about age and more about how long I have had this. Maybe now his office staff will take me seriously when I call and tell them how much pain I was in the night before. I'm just annoyed and scared. I like to have a plan for everything. But since I don't know what's coming, no way to plan for it. Grrrrr.

 

[Emily]

I agree with Crabby, you should get a second opinion. I had surgery when I was 18, and people have had much younger! They should do the scope now, asap, not while your in remission, so that they can see what your disease looks like without being disguised by medication.
My story is fairly similar to yours. I was diagnosed with mild Crohn's but went untreated kind of like you did and now my Crohn's is in the moderate to severe category too. I got used to dealing with the pain and basically ignored it till I got a full blown stricture and had surgery. I definitely understand where you're coming from.
Anyway I hope you hear back from them and can start Humira soon. But if things start to get really bad and this doctor isn't helping, I'd look for a new GI and demand a colonoscopy.

 

[Amberaut]

Well I did have a colonoscopy Friday, do I guess right now I need to wait for the biopsys to come back. I am going to call the office and see about the one RX that I couldn't filled. But the steroids are already helping. I was able to eat today! Some egg whites, Tonys pizza and 4 raviolis, the canned ones. That's more than I have had in the past week. And so far, only hurts when it passes through my large intestines, but nothing like last week.
I think I just got freaked out knowing that I got worse cause I was too stubborn to go to the Doc. My husband drove me out to see my Mom yesterday and apparently I look awful lol. My sis called today and informed of that. Gotta love your family!